Monthly Archives: June 2014

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I refuse to make a bucket list. Why lay out all the goals you set for yourself before you die? Isn’t that kind of morbid? I understand why the overused term, along with “spoiler alert” and others, was on the banished word list in 2013.

If I’m honest with you, I’ll admit that since my cancer diagnosis a few years ago, I did start thinking about all the things I had left to do before I died. I refused to come up with a bucket list, though, because I figured once I had accomplished everything on it, I’d die. I know I could always extend the list, but is it really a bucket list then?

Lunch got me thinking about this. J. made me an excellent unbuttered grilled ham and cheese on my bland low-sodium bread. It’s been a very long time since I’ve had a ham sandwich. In fact, I can’t remember the last. Ham is not high on the sodium-restricted person’s list of appropriate foods. But today I felt like ham so we bought a very small amount of the good stuff, and I went for J.’s full-sodium cheese to complement it, so I almost didn’t notice the bland unbuttered bread. I’m sure I could have bought a better sandwich at a diner–butter-laden, a lot more ham, salty sourdough bread–but this sandwich was pretty good. Is this the last ham sandwich I’ll ever eat? I sure hope not.

The other thing that got me thinking was my current novel, a whopping 771 pages. I can’t put this book down because: a) it’s good; b) I am a slow reader; and c) I have to return it to the library in a few weeks. I sometimes think about how many more novels I’ll have a chance to read before I die. I don’t have a particular list of novels I want to get through, but sometimes I ponder whether this one will be my last. And considering I couldn’t read much of anything after my hospital discharge a few years back–I had the attention span of a fruitfly for a while–I’m pleased to be able to read anything longer than an article in a trashy magazine.

Maybe I scorn bucket lists because I can’t think of much to put on mine. It’s not like I’ve travelled everywhere I wanted to or climbed some major international peaks (polycythemia breeds altitude sickness) or become a gourmet low-sodium chef, but I don’t have a lot of pressing gaps in my life thus far. If I focus on what I haven’t done yet, won’t I just be depressed?

I’d rather focus on being happy with all I have accomplished, even if it’s simple stuff like solving the odd 5+ star sudoku in the weekend newspaper or finding out I’ve helped someone in a therapy session or two. And since I’ve had cancer, I’ve even made a few new friends. Who’d have thought anyone would want to befriend someone with leukemia? I know there will always be stuff left to do, but I choose to focus on the good things that have already happened.

Yesterday, I received my monthly allowance of $1071.28 from the Canadian government, and I didn’t even have to do any chores! Doesn’t “allowance” have a nicer ring than “disability benefit”? Yes, this means that, in addition to funding my exorbitant medical costs, your taxes are allowing me to buy a few groceries without asking J. for $20. Before you resent me, know that I too was contributing to this fund until recently.

As a psychologist, I was often approached to write letters in support of a disability leave. Some of those requests I granted and others I turned down. I never envisioned applying for disability funding myself.

After two months in hospital a few years back, I was in no condition to work, and so I sought government support. (Many years earlier, I became ineligible for private disability insurance.) The Canadian government does not grant disability benefits easily; I needed to fill out lengthy forms as did two of my physicians. Soon I learned I would be covered, and funds have magically appeared in my bank account on the last Thursday of every month since.

What are the criteria for such funding? The surest way to be granted this benefit is to be dying, which I guess in some sense I am. Hate to break it to you, but you are too. Dying is a logical consequence of being born. Odds are I may die a bit sooner than you, though: my leukemia is incurable, I will always be on chemotherapy, and at some point that chemotherapy may be less effective than it has been thus far. Unless there is some unexpected medical advance, my cancer will never be cured. Still, I plan to live with leukemia for a very long time, assuming my other medical issues don’t interfere.

Of course there are downsides to my health challenges, but one upside is that the government is supporting me willingly. And I am allowed to work a small amount without losing my benefit. If I find I’m able to work more, the government may withdraw my funding.

Were I living on my own, I would be subsisting below the poverty line with this pittance. Thankfully I am not, because J. is supporting us. Going from being an equal financial partner to relying on J. financially has been a shock. We earn half of what we used to but are still able to cover our expenses. If the tables were turned, I would gladly be in J.’s shoes, but still I’ve had to adjust to the role shift, as has J.

Without J., I would have to work more, which would be a challenge. I’ve met people who are not this lucky, who return to work too soon because they have to. I do really miss working, but would I be a good psychologist if I worked more? And would I have to relinquish my self-care “job”? For now, I am grateful the government pays my allowance, however small.

So let me know if you want to go for coffee. I seem to have the time. Oh, and it’s on me (or should I say “you”, dear taxpayer?)

I always knew I wasn’t the bravest kid on the block, but this reality really hit me when I had a sedating procedure at the hospital a few months back. I’ve had this procedure as a precautionary measure every year or two for the past 10. I’ll admit I get pretty anxious before I go in because any little mistake would lead to dire consequences. My doctor could do the procedure with his eyes closed, but still I worry. You’d think a psychologist might better be able to manage her anxiety.

Imagine a 50-year-old woman here.

Normally, I’m assigned a day-surgery bed where I am prepped for the procedure, including insertion of an IV. Between blood tests and other procedures, I’ve been poked with many, many needles. I bought an anaesthetic cream developed for kids–I realize I’m being a little childlike here–to numb the area before the worst pokes. I’m not afraid of needles; I just don’t like the way they feel. Does anyone?

When I was assigned my bed, I learned that J. would have to wait outside in the hall instead of coming in with me as she had in the past. J. left but I really didn’t want her to. The young nurse did not seem to notice my reaction to this new rule. Yes, I, a 50-year-old woman but really more of a baby at this moment, started tearing up. I surprised myself even moreso when the tears didn’t subside. I should have just asked the nurse if J. could stay, but I chickened out. Despite my capacity to advocate for myself within the medical system, I remained uncharacteristically silent.

My teary reaction surprised me. I count on J.’s being there during all invasive procedures, holding my hand or distracting me or doing whatever it is she does that makes the process easier. She blathers on about mundane topics to take my mind off what’s happening. I’m lucky to have her; not everyone has such support. But until that moment, I’m not sure I realized how dependent I’ve become on her calm, distracting presence to get through all this being-a-patient-with-a-defective-body intrusive stuff.

So I told myself: “Next time I need sedation for a procedure, I’ll insist that J. be allowed to stay.” Not surprisingly, the opportunity arose a few months later. When I asked whether J. could stay with me, the immediate response after no, and my baby tears, was, “Do you have a mental health diagnosis?” Well, I guess that depends on how you define the term. You have likely formed your own opinions, dear reader, and I thank you for not sharing them with me.

I know I should be able to cope on my own by now; in fact, the list of things I should be able to do but don’t is endless. Nevertheless, sometimes the rules need to be balanced with patient needs. Thankfully, when I’ve asked for a reasonable concession in the past, most often it’s been granted.

And so, to my relief, J. was allowed to stay. And I barely felt the IV go in.

I try to be a mensch (a good person and a good term to have in your Yiddish arsenal). I hold doors for people, I merge responsibly, I let people with just a few items go ahead of me at the checkout, I’d even grab items from higher shelves for short people were I not so shrimpy myself. I try to be kind to people who are sick, talk to people who are sad, and tell people when I appreciate something they’ve done. All of these things might be considered mitzvot (plural of mitzvah), i.e., “good deeds”.

But I’m in a huge mitzvah debt on the home front, where I am blessed with both a husband and a wife. J. does almost everything around here because my energy is so limited. The indoor work, the outdoor work, the paycheque work, everything. She mows the lawn and weeds (I can’t tell weeds from flowers), and she’s banned me from using the snowblower. She does the laundry and irons and cleans the house. In return, I walk the dog and cook and bake and tidy and run errands, within my limits, but much of my time is devoted to caring for myself.

When I was describing this labour imbalance to some friends, an astute young girl asked: “But what do YOU do?” Touché. I speak of this inequity often to remind people that taking care of a sickie involves a lot more than just going to doctors’ appointments together.

Recently, J. had to go out after dinner so, after doing the dishes (a rarity), I tried to do a mitzvah: I decided to take out the overflowing garbage and recycling for the first time in months. I lugged my load out to the back alley. My efforts were thwarted, however, by the theft of our city-provided bins. Our garbage must be mighty appealing for someone to have lifted the bins. Upon her return, J. located the wandering bins and completed the task for me.

The next day, I decided to wash the floor. If I don’t do it (and I never do) you know who will. Just as I finished my lunch and got ready to mop, Jelly started vomiting on said floor. And she kept vomiting for a record hour and a half, until her other mother arrived home. I can’t say I washed the whole floor, but I sure did a good series of spot cleans.

Today was the final straw: it was a beautiful day so I decided to attempt some weeding. I wasn’t kidding when I said I couldn’t tell the flowers from the weeds. So a few minutes in, after having harvested one of our two successful garlic plants more than a bit early, I texted this picture to J., with one word, “Weed?”

(I’m sure the pink things are flowers.)

Her response? “STOP. And desist immediately. I’m serious. Get out of my garden NOW!!!!” And so I answered, “There has only been one death by Annie so far.” J. ended the exchange with: “This isn’t funny. Please stop.” And so I did.

These attempts are but the tip of the iceberg of my partner inadequacy. Who am I kidding calling my efforts mitzvot? I’m just doing something that would normally and unfairly fall to J.

At this moment, J. is outside trying to replant the garlic, and I’ve come in to make dinner. And we’ve both decided that I will stay inside and not try to do anything, since all I do is make work for J. I guess I’ll just have to find other ways to express my appreciation. Come to think of it, she’s never turned down my baking.

Oh. J. just texted: “You could bring me a beer.” That’s the least I could do. Gotta run!

Sometimes questions arise between doctor visits. Since we can’t just run the question by our doctors without an appointment, we often rely on the internet to bridge that gap. I’ve already hassled you relentlessly for researching health concerns on the internet. Since you probably haven’t heeded my warnings, I thought I’d provide some unsolicited guidance on how to manage such research:

1) If you’re health anxious like me, and think any ache or pain may indicate cancer, know that cancer is a possible explanation for everything. Then don’t assume that your ache or pain is cancerous. Sure, a pain in the ass may indicate cancer, but it could also mean you’ve pulled a muscle at the gym. (Not assuming the worst is easier said than done, I realize.)

2) If you’re going to consult the internet, use a reputable site. Many sites are not carefully scrutinized, and there are quacks in any profession and laypeople masquerading as experts.

3) Find someone who is a step removed to vet the information for you. J. is my trusty internet researcher when I fear what I might find. She’s good at not assuming the worst, and she ferrets out the information I need to know. Sometimes she even omits stuff that might make me anxious. She’s not stewing about that worst possibility, and she knows it won’t help me to.

4) Consider the internet after you discuss your concern with your physician. Make sure you clarify everything you are stewing about directly with your doctor, and then evaluate whether you still need that internet search.

5) Consider your suggestibility quotient. For example, I rarely research medication side effects until after I’ve started a drug because I know I’d have every side effect listed. I also figure my doctor or pharmacist will tell me the important ones. Checking after I’ve been on the medication may explain any reactions I’ve had.

6) Seek information from another medical professional, such as your nurse practitioner, your pharmacist or the knowledgeable nurse at the end of your local medical phone line (it’s HealthLink in Alberta). Often these people have answers at the ready.

7) Finally, use chat rooms with caution. The first room I visited was filled with personal horror stories, including that of a woman who believed that polycythemia had prevented her from carrying a pregnancy to term. I have no idea whether that’s true, but being sideswiped by this possibility was distressing at that time. I know chat rooms can be a great support for some, but make sure you find a safe room with like-minded people; if you feel worse–more hopeless or more scared–after you venture in, you probably want to vacate the premises pronto.

Maybe I’m the only one who usually feels worse, i.e., more terrified, more hopeless, closer to death, when I consult the internet than when I don’t. I’ve come across some pretty awful stuff on line, stuff that’s left me stewing for days, or at least until I could chat with my doctor. So please proceed with caution, especially if you’re anxious like me.

Or just ignore me and keep doing what you’re doing. But if you’re upset by what you find, you may hear me whispering, “I told you so.”

In “The Tipping Point”, Malcolm Gladwell talked about different personality types, but the only one I recall is “the connector“. According to Gladwell, a connector is a person “with a truly extraordinary knack of making friends and acquaintances.” I can’t be the only one to realize that dogs, not people, are the ultimate connectors.

My first dog, Grover, was a skilled peer counsellor in his younger years. Named after the fuzzy blue monster on Sesame Street, Grover welcomed a succession of timid foster dogs into our home, giving them a few days to warm up before demanding they start playing with him. Over time, he effectively brought all of them out of their shells. To know Grover was to love him, for dogs and humans alike.

Grover developed a particular fondness for Jenna, a mangy hip-challenged border collie cross whom J. hand fed under the kitchen table for days before the waif slowly ventured out. Ultimately, Jenna was adopted by the Double Ps (their chosen moniker). The Ps were the perfect adoptive parents, with more dog experience than us, and they welcomed this charming mutt into their home. We came to love the Ps as we loved Jenna, and they remain an important part of our lives despite their moving away. They unwittingly witnessed our tiny spontaneous wedding (tiny = officiant, J. & I, Double Ps, who doubled as backup singers, and 2 howling dogs). Sadly, Jenna is no more, but our friendship with the Ps endures, as we were reminded during a recent overnight visit.

One-and-only Jenna, survivor against all odds

J. and I moved to our current neighbourhood 12 years ago, initially with Grover and one-eyed wonder Shira (more protector than connector, I’ll admit), followed by a succession of furry children. We’ve gotten to know many people through dog walks on leash and off. We’ve been consoled over the loss of Grover, Shira, and, later, Peanut, the ultimate Basset connector whose tail wagged for anyone within 50 feet. And now we have Jelly, the perpetual puppy and woefully indiscriminate love sponge.

Counsellor, wagger, love sponge

These furry beasts bestow unconditional affection on us, and have connected us with many wonderful folk over the years. I realize this all the more now that I am not working: the house would be so empty without my cuddly companion. I talk to Jelly even as she sleeps the day away, and she’s ever available for a little contact comfort.

After my prolonged hospital stay a few years back, J. was hesitant to leave me home alone, and I was nervous to stay. But we realized that, thanks to connections fostered by our four-legged friends, there are many doors I could knock on if I needed help.

Yes, we have met close friends, the ultimate dogsitter (no, you can’t have her number), park buddies, both dog and human, and so many lovely people through our pooches. I’m much too shy to be a connector, but the dogs? They compensate easily for all my social awkwardness.

This weekend, J. and I ventured up north of Edmonton for the marriage of J.’s youngest niece to her high-school sweetheart. I knew I would be out of my element in many ways, but I was looking forward to celebrating the beginning of a new phase in this lovely young couple’s life.

My illness has interfered with many aspects of my own life, but it has disrupted J.’s life even more. I managed to get sick with my first blood disorder and my impressive blood clot just before J. and I first met. Because my energy is low and at points I have needed intensive caretaking, J. has seen much less of her extended family since I came on the scene. She has missed many family celebrations. Her nieces and nephew have grown up, partnered off, and created families of their own. She has seen pictures of children she had never met. So much has changed over this time.

Despite how much we have both missed, both J. and I were welcomed warmly to this celebration. We were embraced by extended family, who greeted us affectionately and showed interest in our lives. We could not have asked for more. I was particularly struck by the number of people who were aware of what we had been through of late and asked how I was doing. And they weren’t just asking; they were clearly inquiring about my health, they were aware I was not working, and they wanted to know how I was managing day to day. Everyone was kind and concerned and attentive.

Furthermore, my medical needs were understood and accommodated. The family was accepting when, rather than joining the family get-together between the ceremony and dinner, J. drove me to our hotel so I could nap. J.’s sister kindly arranged for our family pictures to take place immediately following the ceremony so I’d have time for that critical nap. And when we left the festivities early, people understood I probably would really turn into a pumpkin, and not just because I was wearing my first dress in years.

The wedding traditions may have been different than many of those I grew up with, but that was no matter. Jews and Christians alike bless the meal before they eat; they just alter the words a bit. Instead of the hora, I witnessed incredible two stepping. The speeches were funny and affectionate and moving. Of course I cried; I always do. And I imagine questions about the arrival of progeny will start immediately. The bride has some catching up to do, since her older siblings are already loving and caring parents. There was so much to celebrate.

Hitched!

Here’s to the newlyweds! May they enjoy many happy, healthy years together. I know they are surrounded by love and support, just as J. and I experienced at this lovely celebration. And I have no doubt there will be many willing babysitters when the time comes.

I woke up a bit shaky–vulnerable?–today. There was no reason I could identify, I just felt a little unsettled all day. Maybe I shouldn’t tell you things like this; you’ll think I’m an emotionally unstable psychologist. (Who am I kidding? You must know that already.) I know on days like this, I must get out of the house or I’ll sit at home and mope, so out I went. I went through my day as planned, fitting in the tears when I needed to. Sometimes it helps to have to hold it together in public.

My first stop was my Thursday morning yoga class with my favourite yoga teacher. I’ve been yoga deprived since gout struck, but I decided to give it a try today. I figured I’d have to modify a lot–one-legged downward dog, anyone?–but I’d do the best I could. I felt bad for bringing what I was sure was bad energy to the calm room, but I tried my best to contain my mood.

One of the women attending this class with me for almost two years now noticed I was limping and gently asked me if I was okay after class. C. is a lovely woman who kindly laughs at my inappropriate jokes and whose company I’ve enjoyed, although we don’t know each other very well. Somehow we got to talking and she mentioned my bruising and now my foot. And I decided I might try her with my bigger life challenge, which is the leukemia.

Sometimes I get a sense from someone, even someone I don’t know very well, that she will be able to handle the truth, and I was right. C.’s response was perfect if not ironic considering my glum mood that day. She told me–I hope I’m not misremembering since I was so taken aback–that I am an inspiration. She sees me as always having a smile on my face. I’m not telling you what she said to brag; you know me better than that. I’m telling you because I was deeply touched and I was truly surprised, especially today of all days. It was just what I needed to hear when I was feeling so inexplicably blue.

I’m on the left. No, I’m on the right.

I must admit that I didn’t necessarily stop crying after this heartwarming interaction, although happy tears were now mixed in with the sad ones. As a psychology undergrad, I remember learning that young children can’t understand that someone can have two conflicting emotions at the same time. Now that I’m fifty, I have recently come to understand such internal emotional conflicts, and I ride them out.

Tomorrow I’ll probably be happy again. My day will start with a healing dog walk, followed by the return of an old client, my first in a few months. Yay! I have leftovers of one of my favourite meals awaiting me for lunch before J. and I hit the road for a wedding in Edmonton. And I know today’s sad mood will pass. Holding on to C.’s words today will certainly help.

Over the past month, I’ve invited a few medical professionals I respect highly to take a look at my blog. I realized to my horror after they read that I might have been wise to include a medical disclaimer somewhere in here. Remember, I am just your average gal with an unfortunate variety of complicated medical problems, including cancer.

With my professional training, I am entitled to the “Dr.” title, but I’m just not the doctor type. I insist that clients call me Annie; Dr. is much too formal for me. Also, to be honest, and risking the offence of my professional peers, I don’t consider myself a real doctor.

I do use the title for professional interactions, even though doing so feels somewhat fraudulent, given my imposter syndrome and all. If I want to speak directly to a physician, I’ll be sure to let her receptionist know that I’m a doctor too. I also have Dr. on my credit cards. I’ve often wondered whether my pharmacist, who has seen those cards too many times, understands why I ask such uninformed questions about potential medication interactions and side effects.

Doctor of psychology or not, I am merely a layperson when it comes to my health, a fact that I should have stressed much earlier in this blogging process. Sometimes I think it would help me if I were a physician because I’d better understand my body, but then I remember that too much knowledge would overwhelm me. Best I muddle through as your average Jill and count on my medical team to educate me.

I write about my medical experiences based on what doctors have told me, but there are many opportunities for my own misinterpretations or misunderstandings or wishful distortions. I’ve done my best to grasp my own medical complexities in order to be able to ask informed questions and understand the answers. I think anyone who wants to advocate for her health needs to do the same. Now that’s advice I can safely urge you to follow.

Now that I think of it, perhaps I’ll have to get one of those kind knowledgeable physician-readers to be the medical consultant on my blog. I’m sure one could add this to his schedule. Okay, forget that; I’ve never met a physician who isn’t flying by the seat of his or her pants every minute of the day (and often through the night). That’s why they deserve the oft-maligned big bucks.

Please take any medical information I provide with a humongous grain of salt. Don’t act on anything I’ve done without checking it with your own medical team. I could be misinformed, I could be wrong, I could be stupid, who knows how else I might be misleading you. Sometimes, like in my previous post, I’m nonchalant about the medical advice I don’t heed. I’d hate to discover that you’ve suffered ill consequences by following my lead. Please listen to your wise medical advisors and do what they say.

When it comes to psychological advice, however, I’m much more trustworthy. I may not be a real doctor, but I did study for years to get that darn degree.

I’ve already messed up my plan for a healthy June. At the end of my limpy vacation, I came down with a fever, with no symptoms other than feeling crummy. I didn’t even get the benefit of an appetite loss to help me lose that vacation weight. Just aches and pains and exhaustion. Following a slow and spacey walk, I spent the last afternoon at our hotel, sleeping through Food Network repeats.

How did I know I had a fever? Other than those typical aches and pains, I pulled out my handy travel thermometer. Yes, I keep a thermometer in my travel bag for just such occasions. Call me a hypochondriac, but I trust you’ll regret that once I explain.

We’ve all gotten fevers. They go up and then they come down. I used to be fairly nonchalant about a fever until the darn leukemia thing. A major instructional point in Cancer 101 is that fevers are cause for concern. We cancerous folk are supposed to walk that fever straight to the hospital to rule out a more serious infection. Blood disorders and/or chemotherapy can do a number on previously well-functioning immune systems, without which the body is sunk. At that point, you don’t even have to pick something up from someone else; you can just make yourself sick. I can tell you all about it since this scary lack of immunity kept me in the ICU for a stretch. Actually, ask J.; I was pretty out of it at that point.

So you can rescind the “hypochondriac” label now. I know you feel bad.

Why did I get the fever and why did it spike so high? Who knows. I could have picked up a bug or eaten something bad or suppressed my immune system with my gout treatment or chemo or whatever. Does it really matter? All that matters is that that fever wrecked our planned anniversary dinner–the one thing J. really wanted to do while we were away–and killed that last gorgeous Vancouver day. It meant that we spent the day, during my wakeful periods, discussing whether we should fly home early or visit the hospital that was fortuitously two buildings away. J. and I have had these discussions through other vacation fevers before and we’ll likely have them again.

In the end, I disobeyed Cancer 101. (Please don’t do what I do, EVER.) I just stayed in bed and hoped that the fever would break, and it did, 48 hours later. We took a cab to the airport since I wasn’t up to Vancouver’s excellent public transit, and we flew home. All evening, J. ran around like a chicken with her head cut off, doing laundry and cooking dinner and tidying the house, knowing she had to go to work the next day, while I watched from the couch. As if she hadn’t done enough for us over the past gouty month.

When my mood tanked upon realizing I’d already blown my June goal, J. reminded me that we can’t control what happens; we can only control how we deal with events. I’ve clearly got work to do.

Thank goodness someone around here has perspective. And I’m the psychologist?